September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics, albeit more emotional and difficult to consider. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.
By Joanna Stibgen Meyers
I was visiting with a friend this week and Paige's CaringBridge (blog of her illness) came up. It was described as "heavy" and "intense." Really??!! Imagine living it....
Before cancer, Paige was bright, funny, nurturing and caring. She was also sassy, bossy and independent. As a 10 year old girl, she loved to giggle with her friends, mother her little brother, and had a passion for animals. She was intelligent and an aspiring veterinarian. In her illness, all those attributes continued, and even blossomed. It's impossible to capture her essence with one blog post. She was amazing and inspiring....and silly and feisty and still bossy! And through it all, she wanted to look after her brother and his well being was one of her biggest concerns. She was always thinking about everyone else.
On September 25, 2006, I took her to the pediatrician after a weekend of fever and a sore throat. After a two hour wait, we were told that she had leukemia (after further testing, we learned it was AML M1). I was expecting strep throat, not leukemia! Her first question was, "Am I going to be ok?" I responded, "I do not know what's going to happen but I do know two things. First, I will be by your side every minute, and secondly, I will never lie to you. I will tell you everything." She was immediately calm and said, "Ok, what's next?" That was Paige. We were then escorted to the PICU (pediatric intensive care unit) at the adjoining hospital. And the journey began...we were to have 5 rounds of inpatient chemo over six months.
As I look back over our Journal entries, a few things stand out. We spent more days in the hospital than at home during the first 3 months of treatment. On a December 5th post, I referenced being home for 9 days as being spoiled...wow. It was very difficult to be away from my son (who was 8) for that long. But I followed Paige's lead and kept a mostly positive attitude. In the midst of so much suffering and separation, there was so much compassion and gratitude. I am a believer in God. Not a God that causes bad things to happen for a greater purpose, but a God takes the bad and creates good from it. We were and still are humbled by the outpouring of love and generosity that came from our community, friends and family.
Here is an excerpt from my thanksgiving post:
Happy Thanksgiving Everyone,
Paige's wish for Thanksgiving today was she hoped everyone on our floor would get to go home by tomorrow!! She has so much to teach all of us. I continue to be amazed by her!
We have so much to be grateful for in our lives. One good thing about being here at Children's is we are constantly reminded that there is always someone worse off than us. Kind of keeps the complaining at a minimum!!
My greatest wish for tomorrow would be that everyone just take that moment to STOP. Stop the bickering, complaining, arguing, and dis- contentedness. STOP and cherish the time you have with your families. Cherish your children, your spouses, your friends, your boyfriends/girlfriends, and even your exes (they most likely gave you wonderful children). Be grateful for all our God has given to each one of us. I know I sound preachy....but, just don't wait for adverse circumstances to make each of you realize how very much we all have to be thankful for.
Joanna and Paige
Still good advice.
Her attitude never wavered. She endured with a grace beyond her years. Her hope was that if she had to have cancer, maybe it would mean that her friends would be spared. She always said she was glad it was her and not her brother, as he could never handle it! She was so very protective of her little brother. Paige endured 4 rounds of chemo, each lasting 5-10 days and 5 admissions for fever lasting several days - several weeks during the first 6 months of treatment. After round 4, she spent almost 2 full months in the hospital with one infection after another. Her body just could not recover.
Then on March 22, 2007, the words a cancer mom never wants to hear....RELAPSE. The leukemia had returned. I will never forget my journal entry from that day. Paige had a week reprieve and then restarted chemo. It was intense and landed her back in the PICU with more complications.
There was a constant balancing of the leukemia and the side effects from the chemotherapy. Until in June when the other shoe dropped and we heard the words "out of medical options." Still, Paige never lost faith, or her sense of humor. One day while in the hospital, Paige was not able to eat all day long due to testing. When she was finally given permission to eat at 8 pm, she wanted filet mignon and a baked potato. We scrambled trying to find how we could get it to the hospital. She savored every bite. Upon swallowing the very last morsel, immediately asked for the "pink bucket."
I felt horrible for her as she emptied her stomach contents into our ever constant companion. When she finished, she looked up and said "Well, at least I got to enjoy it twice!" The nurses at the hospital still remember that incident and her positive attitude when then think of my beloved Paige."
It's about that time I notice an urgent cry in my posts about the need for better funding and better research for childhood cancer. It's also when Paige noticed all the Pink for breast cancer. It was September, CHILDHOOD CANCER AWARENESS MONTH and no one knew it outside of the childhood cancer community. "Where's the GOLD?" she asked. I had no answers. She made me promise to make sure everyone knew about Childhood Cancer because surely if they knew just how bad it was, they would do something about it, right? I promised I would make a difference. Her life would make a difference. So as painful as this writing has been, with tears streaming and turning to sobs at the relapse paragraph, I do it....for Paige.
Paige's goal was to bring awareness to Childhood Cancer, represented by the Gold Ribbon. Paige wanted no other child to suffer. Paige wanted the Gold Ribbon to be just as symbolic as the pink ribbon, generating funds for research. Paige believed that:
Paige's battle with cancer ended on November 7, 2007. Paige's Pals continue the fight in her honor. We will participate in the Chicago CureSearch Walk on September 7th at Soldier Field. To join us or donate to RESEARCH, please visit our team page.
I first saw Paige's Mom in the hallway of Children's Memorial Hospital. We were just admitted for Donna's first round of chemo in June 2007 the same day that Joanna had learned that Paige had "no medical options." To see her mother's pain was honestly shocking for us, too painful to even consider. Paige and her Mom have since guided me into how to show strength and love and perseverance. I am grateful to them both.